Waking Up With A Broken Heart | An Eternal Struggle to Survive..

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description:An Eternal Struggle to Survive..............
Waking Up With A Broken Heart

An Eternal Struggle to Survive..

jump to navigation Celebration of Life.. April 2, 2020 Posted by Waking Up With A Broken Heart in Uncategorized.
add a comment 9 years ago today we held Sals memorial service, his Celebration of Life Somehow, some way, he gave me the strength to give his eulogy below.Saturday April 2nd, 2011Thank you all for joining us in this Celebration of Sal’s short but very noble and courageous life. The last 3 ½ years of Sal’s life have been filled with heartache, pain, and suffering. But, yet, they have also been filled with love, laughter, happiness and joy…..as you can tell by all the pictures. Sal’s journey thru this disease was long and agonizing. He never had a break. But he never complained. He understood his path and never questioned it.Our first 18 months were spent at Sloan Kettering Cancer Center in New York City. That’s where we learned what our new life was all about. It was terrifying, for all of us. And even though Sal rarely complained about anything he was going thru, I know inside he had to be scared. Who wouldn’t be? He was poked, prodded, and humiliated over and over. The medicines made him deathly ill. When we were not inpatient he would go home hooked up to backpacks filled with chemo’s, fluids, and anti nausea meds. We would walk back and forth the 20 blocks every day, no matter how hot or cold out. I didn’t put him in a taxi unless it was an emergency since his counts were always so low.But between the chemo’s, between the nausea and vomiting, the scans and biopsies, between the radiation treatments and all the surgeries, between all these things we always managed to have fun.His beloved apartment in New York was his home away from home, his refuge. Here he would feel safe. At night we would have parties- Sal loves parties, big and small- We would fill bowls with all his favorite snacks, bake cookies, order his favorite foods, play video games and watch movies all night. We would snuggle and take care of each other.On our days off from the hospital we would walk to the little toy store, spend hours at Barnes and Noble, go to the movies, look for ice cream trucks, visit Toys R Us or if he was neutropenic just hang out and have a cozy pajama day and order toys online. At night we would video chat with daddy and the kids on the computer, catching up with all the days events and watching them have dinner. It didn’t matter what we did as long as we were together and he was happy.After 18 straight months of treatment in NY and continued progression it was evident there was nothing more they had to offer Sal except high dose chemo. It was scary for Sal I to leave Sloan but we needed new, not so toxic treatments. So wherever Daddy said we needed to go next we went, but returning to Sloan several times for the dreaded hi dose chemo. Sal and I traveled the country for various treatments. But with each new hospital came a new adventure. A new city to explore, new toys stores in which to shop, new malls, zoo’s and aquariums to visit. We would explore it all. Whatever my baby wanted to do we did. His laughter and smiles just melted my heart, I just wanted to always see him happy, I tried my best to make it fun for him. We were supposed to get married one day……that was the plan. He told Daddy…. Sorry dad but you’lle have to get another wife cause she’s gonna be my wife.Sal had a very unique personality. He was always laughing and smiling, always happy. He lived every day to the fullest. He was funny and loved to make jokes. He loved to sing and dance. He was such a gossiper, he always had his ears open, trying to hear some juicy information on someone so he could pass it along. And he was so brave. One time we went to Key West and he was the only one of the kids who would go parasailing. 600 feet up in the air he went, not just once but twice.Sal had such a love of food. He could out eat any of us. Buffet restaurants were always his favorite. He loved lots and lots of food, steak, broccoli and peppers were some of his favorites. He loved when his daddy would cook him a smorgasbord of things, and he would sit on the counter savoring every bite. He also liked to experiment with food…like bananas with ketchup and cotton candy stuffed black olives. He loved visiting all the different cafeterias at all the hospitals, the CHOP cafeteria in Philly was his favorite.At the hospital if he need a transfusion he would try to make a deal with his doctor or beg him with pleading hands to wait…..just till tomorrow.He was always very busy and had something planned for each day and transfusions always got in the way.Sal’s favorite color was blue. He would only buy blue toys. He loved blue cotton candy, blue snow cones, blue lollipops, blue pajamas and soft blue blankies.He loved Street Sharks, Power Rangers, Captain America, Mighty Beanz, carnival games, roller coasters, comic books, and video games. He loved parties and birthday cakes……..and we never needed an excuse for a party…. Just having Sal with us was enough. In 3 ½ years he probably had 200 birthday cakes and celebrations, even if it was someone else’s birthday it was Sal’s also.But what Sal especially loved the most was being home with his brothers and sister and his mommy daddy, playing video games, watching movies, making wars with his toys, fishing, swimming and swinging on his beloved columpeo where he would swing for hours, especially when he was in pain, it was very comforting for him. Sal also loved shopping online and in the stores. His favorite stores were Target, Toys R Us and Build –a-Bear. He loved midnight shopping sprees. After everyone went to bed we would go out and have some fun, then we would come home and have midnight snacks and stay up all night. He loved playing Club Penguin and Poptropica on the computer and even though he was never able to go to school and learn how to read he was a master at the computer and his beloved iPad.Sal was the boss of our house. He made all the decisions when we were home. What we would do, where we would go, what we would have for dinner, he decided everything, and noone ever complained. The weekends we were home and he felt good were filled with trips to the flea market where he would carefully examine all the toys and pick out the perfect blue ones. If he was really feeling good carnival rides were also on the agenda. Whatever Sal wanted to do we did…… All Steven I ever wanted was for him to be happy. And he was. He was the happiest little boy in the world, even thru all he was going thru. He was so funny, so spunky so truly amazing and full of life. He took full advantage of every possible moment.Although I miss my baby, the pain is unbearable and each day is a struggle, I am comforted by the fact that he is no longer in pain. The last 3 months of his life were excruciating painful for him, and his little body was tired and just couldn’t fight any more. A few days before he died he told us he was in so much pain, that he needed a new body. Now he has no more pain. I know he can now do all the things he wanted to do so badly. He can run, ride a bike and skateboard, jump, do flips. All the things he would watch everyone else do but were just too painful for him now. It broke my heart to see him struggle just to walk, the neuropathy in his feet had gotten so bad. But he is now playing and having fun with his friends, Liam, Sam, Julian, Gus and all the others that were taken from this earth too soon. Hanging out with Aunt Ina and He is being watched over by Abuela and Abuelo who I know are taking good care of him and cooking him all his favorite foods.Sal has given us many signs in the last 2 weeks that he is here with us and that he is okay and that also gives us some comfort and peace.My heart is eternally broken and our lives will never be the same, But Sal will continue to live on in our hearts forever.GOD bless you all, thank you for being here with us and for loving our precious baby.GOD bless our babyI love you Papo, forever and ever to infiniti.

Thankful.. November 22, 2018 Posted by Waking Up With A Broken Heart in Uncategorized.
add a comment My entire life now forever more revolves around my precious baby Sal. Although my life is tragic and difficult, my list of everyone and everything I am thankful for on this journey continues to grow, but some are so very strong and will never be forgotten.
I am thankful for my sister Maggie who flew home the day I called her to stay with my 4 other children as Steven I flew to Sloan Kettering in NYC to start our new life trying to save our baby’s life.
I am thankful for Maggie’s husband Jeff, who had just married her months before, for his understanding and compassion.
I am thankful for my sister in law Ellen who took over for Maggie 9 months later so she could join us in our fight across the country. Bocky took care of my children like they were her own.
I am thankful for my sister in law Sara who stayed with me and Sal whenever possible in NY, which for me was, at the time, a terrifying new land. For giving Sal a refuge in Connecticut when he had a few days off treatment and for making sure we always had delicious food to eat.
I am more than thankful for Paula, an amazing, loving, kindhearted friend whom I really did not know at the time. Paula gave Sal I a home, “his apartment” for 3 ½ years on the upper east side of NYC. Our home away from home and Sal’s very favorite place to be besides home in Miami.
I am thankful for my friend Candace who at any time of night was there for me, to make me laugh, to talk, to cry with me, to give me Sal our very first pair of Uggs to walk the 20 blocks to and from the hospital in 17 degree weather.
I am thankful for Vanessa, my very first nanny who took amazing care of my children when I was away from home for months at a time. My kids loved her so much.
I am thankful for Lori, my sister in law by marriage, who loved my baby so much, who constantly visited us in the hospital and who kept Sal so very happy.
I am thankful for Uncle Jason who made me laugh when I didn’t think I could. Who talked Sal into letting me go take a shower after almost 2 weeks! Who faithfully brought us dinner every Thursday night and who entertained Sal with his tales of Cosmo the Cockroach.
I am thankful for the family who donated their private jet to fly Sal I home for 2 days on December 31st 2007, after being away from home for 3 months straight.
I am thankful for the woman who overheard me crying hysterically on the phone to my husband while at Cherry’s Pharmacy on a very rainy day @ 5:00. Sal had just been released from the hospital, we walked to the pharmacy to pick up his prescription and it started pouring rain. Anyone who knows NYC knows there are no cabs or car services available at this time. Sal was crying that he wanted to go home. This lady walked up to me and said “I will take you home” Not only did she drive us home, she went back to the pharmacy, picked up Sal’s prescription and brought it back to our apartment. Bless this woman I do not know and never saw again.
I am thankful for Sal’s caring, thoughtful and patient nurses. One time Sal wouldn’t lay still for his special MRI, he asked for Casey she came down and talked him through the entire hour promising to stay with him and walk with him to the toy store, which she so sweetly did. The shark watch they bought that night is still on his favorite Yeti bear that I sleep with every night.
I am thankful for the cab drivers who grew to love Sal. The driver who kept pulling over so I could open the door and throw up because I was so violently ill but had to get to the hospital so Sal could get his treatment. The driver who kissed Sal’s soft bald head as I cringed (I was/am a severe germaphobe) and prayed my baby would be well.
I am thankful for my friend Shari, for her son, Sal’s bestfriend, Chase, who came to visit us in different states whenever they could. To Chase for treating Sal so sweetly and for being his bestfriend for so many years. They planned to build a tunnel between our houses.
I am thankful for Grace who lent us a computer to use so we could iChat with our family at home all the time.
I am thankful for my children, Sal’s brothers sister, ages 6, 8, 10 15 at the time; for somehow understanding why mommy Sal had to be away from them for so long and so often.
I am thankful for my husbands constant research which helped keep our baby alive longer than anyone believed could happen.
I am thankful for Gina, our researcher who worked so feverently to try to find a treatment to save our baby.
I am thankful for the Ronald McDonald House in Minnesota Philadelpha; for their warm and caring volunteers, employees social workers. Sal loved staying there.
I am thankful for the Marriott across from Texas Childrens Hospital who were so nice to my baby. Who had his “very favorite bed ever” “the world’s best room service”.
I am thankful for Guillermo Sal’s very favorite oncologist, for loving my baby, for helping him through this journey, for accommodating his wishes whenever possible, for thinking “outside the box” for being my friend and saving my own life.
I am thankful for my sweet daughter Samantha who traveled with Sal I whenever possible, who at such a young age understood her brothers pain and difficulties. For pretending to get IVs in the infusion room so Sal wouldnt be so upset, who went down to Starbucks to get me coffee when I asked, who was a friend to all the kids in the playroom, who when home was the 2nd mom to her brothers, who understood that mommy had to be away so much to try to save our babys life.
I am thankful for my dozens of friends who were always willing to help and do whatever needed for me and our family.
I am thankful for Corporate Angels who helped us with so many flights to from so many different states.
I am thankful to JetBlue Southwest Airlines for treating my baby like a VIP on every single flight. And especially to the Jetblue pilot who let Sal sit in the cockpit and taught him how to fly a plane.
I am thankful for the Red Cap worker at Amtrak in Penn Station who always helped Sal I get on the train to Philly and made sure we were comfortable before leaving us.
I am thankful to Ana, Sal’s phlebotomist at MCH who listened to Sal and drew his blood wherever he asked her to, even though it was very difficult at times.
I am thankful for the car service driver who stayed with Sal I when we arrived in Minnesota for the first time and no one answered the door at the Ronald McDonald for over 30 minutes.
I am thankful for Pete who drove Sal in his police car looking for a “bad guy” and made Sal feel important special.
I am thankful for my daddy who drove Sal I to and from the airport whenever we needed him, for taking Sal toy shopping when he felt good and for bringing his puppy Johnny to play with Sal when we were home and his counts were high.
I am thankful for the Drs nurses at CHOP that saved Sal’s life in July 2010 when he coded.
I am thankful for Ste, Sal’s forever girlfriend, for never leaving my baby’s side, for loving him and making him feel so very special. I love you.
I am thankful for Leo for being Sals friend, for constantly staying with us in Sals final days, for loving my baby and continuing to be a part of our lives.
I am thankful for the over 700 people from all over the world that came to say goodbye to Sal at his Memorial Service at Sheridan Hills Baptist Church. I am thankful for the Pastors that helped us during his Memorial service and allowed us to play music that Sal loved although most of it was not appropriate for church.
I am beyond thankful for my friend Enyd for being in my life, for sharing her beautiful daughter Erica with me that was Heaven sent by her son Derek to help us get through life without our babies.
I am thankful for the love and support of my family, my friends, and my amazing community.
I am thankful for my friends Enyd, Shari, Esther, Esther, Fran, Candace, Tania Sandy and all the others who make me laugh even when I think I never will again.
I am thankful for everyone in my life.
I am thankful for the 7 Thanksgivings I had with my baby although I wish I had more.
I am thankful for all the very loud and poignant signs my baby sends me to let me know he is with me.
And this year I am beyond thankful for Victor Dante, who helped me make a dream come true, to bring happiness and joy to kids like Sal.
I AM THANKFUL FOR BEING CHOSEN AS SALS MOMMY.

September, Its not the same to you as it is to me.. September 18, 2018 Posted by Waking Up With A Broken Heart in Uncategorized.
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We are just over halfway thru September.  For some that means we are closer to Halloween and they need to decide on their costumes. Thanksgiving is coming, that means its almost Black Friday, lets start making a list.  For others, its the realization that Christmas is just around the corner, start the planning, gift list, parties, decorations?.. And who shall we invite for Christmas Dinner.

For others, like me, its halfway near the end of the month that recognizes and reminds us (like we need reminding)  that Childhood Cancer is REAL, that it is NOT going away, and that its the reason my/our heart is eternally broken and bleeding.

This has been a VERY EPIC year and month so far for the Childhood Cancer World and myself..

After MANY years of advocacy and pleading the STAR Act Unanimously passed the House and the Senate and has been signed into law by the President. This is the bill so many of us have been working to pass for years now, traveling to Washington DC multiple times a year, meeting with our Senators Congressmen to explain the desperate need for the Most Comprehensive Childhood Cancer bill ever introduced ( signed into law!!!). We are beyond thankful for the unanimous support we received to pass this bill. The STAR Act stands for Survivorship, Treatment, Access, Research. This legislation authorizes $30 MILLION annually from 2019 to 2023 for desperately needed programs and research related to childhood cancer. ****At our Childhood Cancer Caucus this past Friday, Rep Michael McCaul informed us that the Star Act would be fully funded this coming year.****The Right to Try Act passed and was signed into law giving children with NO options Hope for survival by giving them access to experimental drugs that show promise, but are not yet FDA approved. When there are no more options available for your child and you know that there is even the slightest chance that a drug could help your child, you have no idea how important this is. I know, I have been there..The RACE for Children Act (The Research to Accelerate Cures and Equity for Children Act) unanimously passed and the President has signed it into law.  The Race for Children Act will bring new drugs to kids with cancer by authorizing the FDA to require that novel drugs developed for adult cancers also be developed for children when the molecular targets of the drugs are relevant to childhood cancers. This is a huge milestone for the Childhood Cancer World.The Creating Hope Act The Creating Hope Act expands the FDAs priority review voucher (PRV) program, allowing pharmaceutical companies to expedite FDA review of more profitable drugs in return for developing treatments for rare pediatric diseases including Childhood Cancers.Last year the Food and Drug Administration approved the first treatment that genetically alters a patient’s own cells to fight cancer, This treatment is for patients with a type of Acute Lymphoblastic Leukemia (ALL), which is the most common form of Childhood Cancer. Scientists genetically modify a patient’s own immune cells in the lab, then infuse these new cells back into the patient’s body. These modified cells – called CAR T cells or chimeric antigen receptor T cells – then prompt the child’s own immune system to attack and kill the leukemia cells. This is a huge milestone that will transform future treatments for our kids. A treatment that holds great promise for all Childhood Cancers. (Mystic Force Foundation funded $125,000 for research into Cart T Cell for Neuroblastoma (the most common solid tumor in young children) with the Promise and Hope of a future filled with less toxic, more effective treatments for our kids.)Our own Foundation, with the support and generosity of the Dante Law Firm individuals and companies in our communities and across the country has opened a Childhood Cancer Haven named The Heroes Hangout, the first of its kind in the country. A place where our Heroes can come hang out, play video games, do crafts, ‘shop’ for toys (at no cost!!), and just have fun like all kids should. We will hold special events on the weekends and Holidays.  The Heroes Hangout will not only be for our sweetest children but for the parents as well. To see your child happy, to bring them joy and laughter while they are going through such a traumatic and painful experience is a feeling that is indescribable unless you have lived through it. The financial burden of a parent with a child battling cancer is most often times overwhelming to the point where many lose their jobs, their insurance and many times must file for bankruptcy. Although there is no greater joy to these parents than to see their child with a smile on their face, the simple task of buying a toy is often a luxury that many cannot afford. (My own babys bills were close to $5 MILLION!) The Heroes Hangout will help parents in this sense as they will have a place to bring their child that will allow them to enjoy the happiness on their children’s faces in a stress-free environment away from the angst of the hospital and the potentially deadly germs of the outside world, at no cost to them whatsoever. Check out our news story here https://wsvn.com/news/local/heroes-hangout-opens-in-north-miami-beach-as-new-haven-for-children-battling-cancer/
We are Thankful for Superintendent Alberto Carvalho for joining us for the Grand Opening and Ribbon cutting ceremony for our Heroes Hangout as well as his continued support of our littlest Heroes through the Miami-Dade County Public Schools.  Students and teachers throughout Miami-Dade County this month will be making cards and posters of support for our Heroes as well as holding toy drives, blanket drives and many other amazing events. We Thank you for the Proclamation to the Mystic Force Foundation as well as all the toys for the Heroes Hangout.We were honored to have our sweet Retinoblastoma Childhood Cancer Warrior JJ as our guest DJ at the Heroes Hangout and Police Car Initiative event. Although JJ lost both eyes to this evil disease, his spirit is not shattered and he is the sweetest happiest child, with a passion for music and a dedication to being the Greatest DJ EVER!!Our Childhood Cancer Police Car Initiative has brought together Police Departments from across Miami-Dade County in a United effort NEVER seen before in support of our littlest Heroes batting this devastating disease.  To see these police cars wrapped and decorated with Gold Ribbons and phrases of support for our Heroes is truly a remarkable and heart warming sight. Appreciation for this can never be put into words. We are truly #TheForceBehindTheCure.Our annual Mayoral Proclamation Initiative is in full force and as every year, we look forward to receiving Childhood cancer Awareness Proclamations from all 34 municipalities in Miami-Dade County.  We are thankful to the cities of North Miami Beach, Aventura, North Bay Village and Surfside which have already recognized this very important month. We have received Governor Rick Scotts Proclamation proclaiming September as Childhood Cancer Awareness Month in the State of Florida.  We appreciate the Governors continued support of our littlest Heroes. The signed Proclamation will be hung in our Heroes Hangout. We will hold GOLD parties this month at our Heroes Hangout, at Nicklaus Childrens Hospital and Joe DiMaggio Childrens Hospital as well. #ChildrenAreMorePreciousThanGold 

A week in our Nations Capitol Our 6th Annual Curefest

On September 13th we held our Golden Toast at The Library of Congress, our annual Celebration to Honor and Thank our Congressional Leaders who are the Champions and the voice for our children on Capitol Hill.  We joined together to thank them and to Celebrate our Victories of the past year.September 14th we attended the 9th Annual Congressional Childhood Cancer Summit in our Nations Capitol. We heard from Representative Michael McCaul, the Founder and Co-Chairman of the Congressional Childhood Cancer Caucus,  NCI Director Dr. Ned Sharpless spoke about pediatric cancer research, the need for basic science, the Cancer Moonshot, and Big Data.  We also heard from Co-Chair Mike Kelly and our own Gavin Lindberg, whos son was in treatment with my own baby. At the Childhood Cancer Summit, NCI Director, Ned Sharpless, said that he thinks we are past the 4% of NCI funding for Childhood Cancer Research, and that maybe we are closer to 7%. I say show me the NUMBERS.  Tell me EXACTLY what the amounts are.  No thinking, no guessing, we want TRUE FACTS. Dont just say what you think we want to hear because we are all pressing you for more.September 15th The 2018 Curefest Rally to the Capitol was filled with hundreds of us gathering at Freedom Plaza in a meet greet of Foundations, of supporters and of families and friends battling Childhood Cancer from all over the country, coming together in a unified effort to support and make change for the Childhood Cancer World.We joined together and walked to the Capitol, carrying pictures, banners, signs and chanting our words in support of change. One of the most emotional chants Please dont look the other wayyou may be walking with us one day You never know if it will happen to you or someone close to you.
September 15th Candlelight Vigil  Once again we gathered at Freedom Plaza. To see these Heroes on the stage telling their stories, asking for change, thanking everyone for their support and many dancing (many who have lost limbs to this torturous disease) is truly an unforgettable experience. Again, we were honored to have Rep. Michael McCaul by our side and have him receive the Golden Gloves Award for being our Champion, his eternal support, his kindness and his dedication to our fight. We walked to the Whitehouse together, united as one, in honor and remembrance of our children.  One by one, on the Whitehouse lawn, we said our Angel childs name and the thousand friends around us repeated each name, a reminder that they will NEVER be forgotten. The breathtakingly beautiful, yet painful singing of Amazing Grace, while holding our candles up to the darkened sky as if to reach our Angels, is, by far, the most difficult moment for me personally. September 16th Curefest Festival on National Mall As Sponsors of this incredible event again this year and our 6th year participating, we are reminded of the impact that people can have when they join forces.  Close to 100 Foundations from all over the country brought together in our Nations Capitol for the largest display of support and solidarity for our littlest Heroes.  Children battling cancer and their families there as well. Please see our pics on Facebook https://www.facebook.com/BeTheForceBehindTheCure/We are Thankful to our friends Dena Sherwood and Mike Gillette from Arms Wide Open Foundation and Emmy award winning The Truth 365 for their drive, their vision and their unparalleled commitment to the Childhood Cancer World as the founders of Curefest and so much more. To Nancy Goodman from Kids v Cancer for writing these bills and changing the the landscape of Childhood Cancer through her policy writing. To Danielle Leach of St Baldricks Foundation for tirelessly walking the halls of Capitol Hill for change. And to the hundreds of other Foundations and advocates that come together to make change for our kids.  It is only through our #UnitedEfforts and being #OneVoice for our Heroes that change is happening.  I and our entire Mystic Force Foundation team are beyond honored and humbled to be a part of this change and this continued HOPE. 

So yes, September is halfway through, BUT, I am not halfway through my efforts of raising awareness, bringing Hope and fighting for kids like my precious Sal.

I am beyond Thankful for the years of support of my City of North Miami Beach and the North Miami Beach Police Department. The support received by this amazing city is like no other and I look forward to our continued collaboration for children battling cancer in South Florida and through out the world.

My baby died due to the #1 disease killer of children in our country.

Did you know that Childhood Cancer kills more kids per year than more than Asthma, Cystic Fibrosis, Diabetes and Pediatric HIV/AIDS combined.

Did you know that 1 in every 285 children will be diagnosed with cancer before the age of 20? Did you know that 16,000 kids a year are diagnosed with cancer in our country and that over 3,000 children die each year from cancer?     NO, Im sure you did not know those facts or at least not before we met.  Why would you know? Why would you want to know that? But I/We need you to know. We need you to let others know. It is the ONLY way that we will continue to make change for our children that so desperately need change.  For the ones battling now, in memory of those that this disease tragically took from us and for the ones that will be diagnosed in the future. Please join me the remainder of this month, and beyond to help make change, to continue our momentum and to remind our Heroes and families that there is HOPE. There is ALWAYS Hope.

I will Forever WAKE UP WITH A BROKEN HEART, but I will also FOREVER fight for what my precious baby died from

Valentine February 14, 2018 Posted by Waking Up With A Broken Heart in Uncategorized.
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Although I have many blessings in my life, the surreal unfathomable tragedy of losing my baby, overshadows all joy and happiness in my life. I can literally feel the blood trickling out of my broken heart as I struggle to breathe at times. Especially on days like today.

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